The Good, The Bad and the Ugly: MRI

After visiting the Cleft Palate Clinic in September I learned that James' cleft is quite rare. Though cleft lips and palates are one of the most common birth defects, they are usually not along the midline. Midline clefts happen around 1 in 100,000 or 1 in 200,000 depending on the source. At first this seemed like it might be nice. The cleft in his lip is small and the scar might be less noticeable. Most clefts have nothing else associated with them. However, midline clefts are associated with other midline defects (such as defects in the brain, heart and kidneys).

A few days after James turned 1 month old, he had an MRI to rule out other midline defects in his brain. When we first got the MRI results the Surgeon called us and read the radiologist report to us and mentioned that the defect was quite large 5 x 6 cm. After a week of trying to imagine this large of a defect in such a small head we reviewed the MRI and radiologist report ourselves. The report did mention a 5x6x5 cm defect. To us it seemed the radiologist likely meant mm not cm. Since then we talked to the surgeons and they seem to agree with our interpretation of the MRI.

Overall the MRI results are good news hidden amid bad news:

• The good news: His brain does not seem to be impacted so he has a chance of developing normally.
• The bad news: He has a meningocele
  (due to a defect in the bone below his brain {cribreform plate}, the coverings of his brain {meninges} have formed a sort of pocket filled with CSF fluid. This may or may not be connected to his nasal cavity and may increase his risk of meningitis. We have a meeting scheduled with a craniofacial team to discuss what their recommendations would be and if/when he might need neurosurgery and craniofacial surgery. There is also debate as to whether his eyes are farther apart than normal {hypertelorism} and if he will need a cranial bipartitian. This will also be discussed.)
• The ugly truth: There still may be more problems we don't know about yet.
  The news that he may develop normally in my opinion outweighs all the other factors here. If it is only the hassle of many surgeries that we have to face (he develops normally and has a normal life expectancy), this problem seems much smaller.